Aggressive VIN3 Regrowth

Hi Paula,

i have had a number of excisions for Vin 3 and each time it has returned. The 2nd op I had the Vin returned almost instantly. I continued to use the cream (Immiquimod) as I was against having any more surgery. It reached a point whereby the Vin was getting worse and they feared it may turn cancerous. I then had another operation which appeared to work. I had no symptoms for a year and a half and now they want to operate again in two weeks as it has returned just as aggressive as it was before. They are also considering doing laser at the same time. Is it possible for them to try laser treatment on you first before going straight for the vulvectomy? 

It’s an awful diagnosis and many of us feel alone. It doesn’t help when even the Doctors don’t know how to cure it. I think sometimes they also don’t understand what it is like for us waking up from the operation not knowing how much they have taken away. The psychological impact can be as great as the physical impact. It’s a very big step to undergo such a major operation, just ensure there are no other options first. Xx sarah

Hi Sarah,

16/1 had Wide Local Excision, Diathermy & Biopsy then 3/7 had All Diathermy as Dr said its No good keep hacking away at your body I believe only in 1 try at WLE.  So 3/7 was all Diathermy plus 2 punch Biopsies of the New 2 area’s but infection was that bad it last for a Month constantly trying different medications & taking Swabs,  thats when she said this is way too aggressive so i’m referring you to my Head of Department who is Professor of Gynae/Oncology.  She explained once u have 1 Wide Local Incision when your sewn back up obviously the area is pulled so your skin is stretched hence the fact it pulls when you sit down.  She talks n treats you as if it was her own body & the effect it has on a Woman, I am really blessed to have such a understanding Vulva Gynae but because she had tried Twice this Year & it’s getting more & more Aggressive she feels it’s time to get Professor Kehoe to see & Treat Me but I asked the question in her opinion does she think I will have a Vulvectomy she said “Yes”. She knows I have some Medical Knowledge and she answered my question.  So tomorrow I will see him for the 1st tine i’m sure he must have seen cases like mine and he will tell me what it the next way to treat this.   This Site is excellent as We all have different symptoms n journey’s & to share our personal experiences is so re-assuring We are Not Alone so Thank You Sarah for your personal journey.  VIN3 is Scary knowing obviously the next stage to it is Invasive Cancer I feel its like a Clock Ticking & you dont know when it will Stop.   

Paula xx

Hi Paula,

bless you, you have had one hell of a journey so far! I’m so glad you have a wonderful vulva gynae that really makes a big difference. I have a great one too. 

I hope the appointment goes well tomorrow and helps you get some answers about the next step. I hope he will give you some reassurance. Let me know how you get on.

sarah xx